We got a copy of the report that Dr. S., the world-reknown Gaucher’s specialist, sent to our genetics doctor. He was very thorough — 2-1/2 pages! Here are some general abnormal exam findings: There was no clear facial dysmorphism that is seen in typical type 2 and some type 3 patients. Liver was enlarged at […]
[Continue reading...]Beginnings of a Hope for Hannah Walk!
24 Feb by
I was chatting with my neighbor after we got back from the hospital, and she is going to help me put together a fundraising walk to raise money for the Children’s Gaucher’s Research Fund and to get our MOUSE! I was so touched and grateful!! We are going to meet next Thursday night (3/5) to […]
[Continue reading...]2 Treatments Down — a lifetime more to go!
23 Feb by
It only took two attempts at an IV this time, thank goodness! As soon as we got to the infusion center, the nurse handed me a bag with IV, flushes, tape, etc., and tells me to go straight upstairs and have Jenyce do it. She is the awesome nurse that was able to get it […]
[Continue reading...]Second Cerezyme Infusion tomorrow morning…
23 Feb by
Two weeks flew by — I feel like so much has happened since Hannah’s first Cerezyme enzyme replacement therapy infusion. I hope the nurses can get the IV in on the first attempt this time!! I’ll update when we get back. I’m not as nervous this time, but I am still anxious. It is still […]
[Continue reading...]I never thought making a video was so emotional…
22 Feb by
I finished the script for Hannah’s video last night. It was very depressing trying to write a script that would share her story, what she has been through, and if we can’t find a treatment, what she has in store for her. I was very depressed when it was over. Since I need to have […]
[Continue reading...]Alec Baldwin Explains Hannah’s Disease Family – Lysosomal Diseases
22 Feb by
HideAndSeek.org Helping to find a cure for Hannah and other kids with lysosomal storage diseases!
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